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Hi Tez, sounds like a similar story to mine years ago with finding the fluctuation initially, although I didn’t drop and recover as well as you did!

Beyond finding what is causing the drop (which may be hypothyroidism) and maintaining a healthy lifestyle, at stage 3 and 6 monthly bloods, there doesn’t sound like much more to do at the moment.

Is your BP high normally?

Good luck with things

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My BP used to be very low, (like 80 over 50 something), especially during my pregnancies. Lately the doctors have said it’s fine (when they’ve bothered to check) and has been recorded on the higher end of normal, (90-110 over 80 ish), with the occasional high number on the top (141/143). My fit watch has recorded higher still which might suggest hypertension but it’s not exactly being checked regularly, and watches aren’t know for their accuracy. Guess I’m at a loss of what to do and which thing I should be most concerned about.

I get quite breathless and have had more frequent swelling of fingers, feet and ankles, and been perspiring which I think is infection/inflammatory related. I honestly don’t know what symptom goes with what condition and know a huge chunk of symptom could be down to the hypothyroidism. Fingers crossed we get that under control.

Thank you for answering, it eases the mind. Ckd is one of those diseases that can make a head spin and feel like the future is uncertain.

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Hello again,

I’m not sure if I am doing this right?

My Gfr has dropped to 14, now stage 5

Go back to Dialysis centre in a couple of weeks. I am really tired and stressed as my Husband just had another fall, he is older than me. I’m So worried about a The Fistula (mentioned in my first post)

Having hospital Dialysis and leaving my really unwell Husband so many times a week. Trying to remain positive But failing badly. It all began with Vasculitis during lockdown, so no treatment.

Would love to know if anyone else lives near Cambridge?

Best wishes and Luck to all going through Kidney disease.

Monica

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When I was around the age of 10 I was constantly getting water infections I was never referred I’m now 53 around 15 years ago I was finally sent for tests I have stage 3a kidney disease li have been doing well but lately I’m getting swelling in legs drained of energy headaches and awful itching

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Hi, I have just found out I am at level 3a CKD which may be why I have fatigue, any advice appreciated thanks Mr B.

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Hi. I’m Sandra. I’m 74 and was diagnosed with Stage 3 CKD about 9 years ago. After a few years I was discharged by the hospital and am now under the care of my GP. I am now at Stage 3B and am considered stable. My GP thinks I’m more likely to die with CKD than from it.

Neither she, nor the medical staff at the hospital, are able to advise me about anything I can do to help myself on my journey. I take Irbesartan to keep my BP in check, and it is very well controlled. I also now take Jardiance and Atarvastatin, although I am neither diabetic, nor have high cholesterol, but my doctor tells me that these all help my kidneys.

My sister is convinced that I should see a nutritionist for further advice on my diet, as she believes doctors don’t know enough!

Can anybody give me further advice?

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Hi, everyone. I’m JD, I’m 58, and have been working for the NHS for over 20 years. I was diagnosed with IgA nephropathy just over a year ago. It’s very early days - I’m hovering between stage 1 and 2 and very, very much hoping it stays there,

It’s all been a bit of a shock, to be honest. and I’m still trying to get my head around it all, especially trying to cope with the fatigue.

Hoping there’s some useful advice and tips with coping with CKD.

JD

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Hi Jo, there is an iGa thread, a couple of us have that.

I am stage 5 with it, just on the tilt of dialysis or not with an eGFR of 13, and have had a forearm fistula in preparation, around 10 weeks ago

Good luck with things and we’re here to discuss and offer any advice

Hi, everyone. I’ve been CKD 3a for a while but now, at 72, find myself CKD 3b with a change of medication adding in Dapagliflozin 10mg. It’s got me down a bit that my kidney function has moved down a notch. I haven’t started the Dapagliflozin til Tuesday but I hated the sound of the higher risk of UTI and Thrush etc.. I need some encouraging words from someone like me. I’m already on a few tablets.

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How did you go from 3b to 3a…I didn’t think that was possible…

Hi Gill, I take that medication and have been for probably 4 years now roughly. I’ve not had any issues and it certainly slowed my eGFR rate falling.

I also take a load of meds daily and swear I rattle in the mornings :joy:

You can move up and down depending on the function of your kidneys and recovery, which can be affected by diet and mediation.

It’s rare to go from 4 to 3b or 5 back to 4 for long, but it is possible.

Hi everyone my name is Paul I’m 62 years old and have stage 4 kidney disease. I was hospitalized about a month ago because my kidney function went down too 15% kidney blood waist level was sky high. I was told I was going to need emergency dialysis however after a two week stay in the hospital kidney function had rose to 21% so I was referred to a nephrologist and released the problem. I’m having is my legs and feet swelled probably three times their size to the point where I couldn’t even put shoes on they’ve been giving me Lasix, which has helped, but I’m still having a problem with swelling, especially after I’m on my feet for a long time. Does anybody else have that problem that they give me some advice? I’d really appreciate it.

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Welcome to Kidney Community! There is some information about itchy skin on this topic here: Itchy Skin - Uncategorised - Kidney Community

Welcome to Kidney Community! You might find these two posts helpful

Stage 3 chronic kidney disease - Living with kidney disease - Kidney Community

What stage were you diagnosed at? - Living with kidney disease / Recently diagnosed - Kidney Community

Hi Sandra, great to have you as part of Kidney Community! You might find this thread about stage 3 CKD useful Stage 3 chronic kidney disease - Living with kidney disease - Kidney Community

Hi JD, welcome to Kidney Community! As @Chalky13 mentioned, there’s some discussion about IgA nephropathy here Iga nephropathy - Living with kidney disease - Kidney Community. I hope some of it is useful for you :slight_smile:

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Hi I have just been diagnosed at 3a and obviously worried, as I have been on lithium for a long time and this may be the cause, although the levels have always been within limits. I am caught I a dilemma now as coming off it could be problematic for my mental health. I generally feel quite weak but do try and exercise regularly. I am 75 and reasonably fit otherwise. I have just sent off for a diet sheet for kidney friendly foods. Thanks for reading Riichard

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Hi Monica, thank you for sharing. It can be really hard to have those worries in your head, hopefully talking about them on Kidney Community will help :purple_heart:

Hi , I live in the West Midlands about 30 miles south of brum, has anyone had a similar experience to me, apparently I was diagnosed with CKD stage 3a back in 21, I found out almost by accident, I requested access via Patient app to se my medical notes, I have multiple Myeloma with peripheral neuropathy , and an enlarged prostate, having a quick scan through my notes I saw CKD 3b I had no idea what it meant, a quick Google told me, so I arranged a appointment with the GP to ask what was the prognosis, he was rather dismissive saying it was common amongst elderly people and nothing to worry about, no mention about diet, drugs or anything. I’m 78 years old and not prone to worrying overmuch about health issues, I rarely drink alcohol and eat reasonably healthy food, my eGFRcreat / is 51ml/min & serum creatinine at 118umol/L.

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